SlideShow DES Books

Not just public health books but real stories of a tragedy experienced by million of men and women…

DES Books

DES Voices

 

The FlickrDES Booksphoto set features front cover images of a selection of books and publications in English and French about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.  Below is a short introduction presenting these books:

BOOKS AND PUBLICATIONS IN ENGLISH

books about diethylstilbestrol image

Toxic Bodies: Hormones Disruptors and the Legacy of DES – Author Nancy Langston, published in 2011

In this gripping exploration, Nancy Langston shows how these chemicals have penetrated into every aspect of our bodies and ecosystems, yet the U.S. government has largely failed to regulate them and has skillfully manipulated scientific uncertainty to delay regulation. Personally affected by endocrine disruptors, Langston argues that the FDA needs to institute proper regulation of these commonly produced synthetic chemicals.

AFSSAPS DES Report – Author French Agency for the Safety of Health Products (AFSSAPS), published in 2011

As a result of a survey conducted in 2010, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It also highlights the crucial role of DES patients in handing down the “record” of their exposure to the next generations. The AFSSAPS report is available to download in English and French.

Origins, How the Nine Months Before Birth Shape the Rest of Our Lives – Author Annie Murphy, first published in 2010

The book’s most chilling section involves the tragic results of thalidomide and diethylstilbestrol (DES), two drugs from the 1950s that were “given to pregnant women in the belief that the fetus would be unaffected.” Ms. Paul reveals six decades later: “It is evidence of the evolving state of our knowledge that the mechanisms by which these substances do their damage are not completely clear, even now.”

DES Voices, From Anger to Action – Author Pat Val Cody, published in 2008.

“Take a new estrogen promoted by the pharmaceutical companies. Add doctors ready to believe in another miracle drug. Take post-World War II women desperate to have a baby after miscarrying. Continue prescription for years. The result is the tragedy experienced by million of DES-exposed mothers, daughters, and son – and perhaps grandchildren. This is the story of what they did about the drug disaster that changed their lives.”

DES Stories, Faces and Voices of People Exposed to Diethylstilbestrol – Author Margaret Lee Braun, Theo Colborn and Nancy M.Stuart, first published in 2001

A tribute to the millions of lives upended by exposure to DES, diethylstilbestrol, synthetic estrogen, toxic chemical, and carcinogenic prescription drug. In photographic portraits and interviews, DES daughters, mothers, and sons tell, in their own voice, what it’s like to be DES-exposed. Today the DES story continues to unfold as research brings new findings to light. DES Stories rings with daring honesty—and points to broader concerns about the effects of endocrine-disrupting chemicals.

To Do No Harm: DES and the Dilemmas of Modern Medicine – Authors Dr. Apfel and Dr. Fisher, first published in 1985

In this important book, Drs. Apfel and Fisher demonstrate how explosive technological advances, physicians’ unconscious fantasies of heroism, and the urging of patients, among other factors, combined to produce the DES disaster-a massive tragedy that could occur again in any area of medicine.

DES Diethylstilbestrol – New Perspectives – Author David A. Edelman, first published in 1986

“An important contribution to the understanding of the uses of DES by pregnant women and the risks associated with this use. It is the only book on this subject that provides a scientifically objective overview and should be read by all who are involved in the debate over the effects of in utero DES exposure, including those men and women who were unfortunately exposed to the drug” American Medical Writers Association, July 1987.

BOOKS AND PUBLICATIONS IN FRENCH

Distilbène: des Mots sur un Scandale – Auteurs Véronique Mahé, publié en 2011

On estime le nombre de victimes du DES à 360 000 en France. Préfacé par Marie Darrieussecq, marraine du Réseau D.E.S. France, ce livre donne la parole aux femmes et aux hommes – mères et pères, filles et fils, compagnons – qui vivent les douloureuses conséquences de ce scandale médical, pour faire entendre leur souffrance et leur colère

DES (Distilbène – Stilboestrol): Trois Générations Réalités Perspectives – Auteur Anne Levadou, publié en 2010

Book presented by the support group Réseau D.E.S. France presenting texts from speakers of the DES symposium organized in France in November 2010.

Moi, Stéphanie, fille Distilbène –  Auteur Stéphanie Chevallier, publié en 2010

Stéphanie Chevallier est présidente de l’association des “Filles DES”. Elle est aujourd’hui l’heureuse maman d’un petit garçon adopté au Vietnam et poursuit son combat au nom des victimes du Distilbène grâce à son important rayonnement médiatique (elle est apparue dans Libération, Le Monde, etc…). Ce livre est son histoire et son combat contre l’ignorance face au DES.

Le Distilbène Trente Ans Après – Auteur Bernard Blanc, publié en 2008

Cet ouvrage est le fruit de la collaboration de plusieurs experts reconnus pour leur compétence dans ce domaine. Il intéressera tous les gynécologues obstétriciens, les urologues, mais aussi les médecins de santé publique et les sages-femmes.

Saskia ou le deuil d’un bébé Distilbène – Auteur Anne-Marie Lof, publié en 2000

Ce livre est le récit poignant d’une mère qui, sans le savoir, attend un « bébé Distilbène », du nom de ce médicament que l’on a donné aux femmes contre les nausées. Or, les filles des mères « contaminées » ont une propension aux fausse-couches et à d’autres pathologies. A partir de ce drame, Anne-Françoise Lof écrit un récit poignant dont le point de départ est la « non-existence » de l’enfant qui n’étant pas né, ni déclaré civilement, est tout de même né, même s’il était mort, une vraie personne, avec un vrai deuil, un vrai enterrement, une vraie souffrance. Elle s’appelait Saskia.

More DES DiEthylStilbestrol Resources

SlideShow DES Drugs

Di-Ethyl Stilbestrol was sold under many names…

DES Drugs Information

DiEthyl-Stilbestrol tablets

 

Di-Ethyl Stilbestrol was sold under many names including Distilbène®, Stilboestrol-Borne®, Benzestrol®, Chlorotrianisene®, Estrobene® and Estrosyn® to name just a few. Many companies manufactured and marketed this drug under more than 200 different brand names.

DES was not only sold generically under a multitude of brand names but also commonly administered in different shapes and forms: tablets, injections, vaginal suppositories and sometimes even as an ingredient in pregnancy vitamins.

In America alone there were 267 drug companies that made and distributed DES and other similar synthetic estrogens because it was un-patented and easily produced. Aggressive marketing pushed DES to also be used for more than 100 medical conditions.

No wonder most people who have been exposed to Diethylstilbestrol don’t even know about it! Check out our DES Drugs photo album on Flickr.

More DES DiEthylStilbestrol Resources

Facebook Pages to Like

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Diethylstilbestrol, Journal of a DES Daughter
Updates for DES mothers, daughters and sons, their families, and anyone interested in the Di-ethyl Stilbestrol® worldwide tragedy.

Association Réseau DES France victimes du Distilbène
Informer les professionnels de la santé mais surtout les victimes du Distilbène®.

DES Action USA
An estimated 5-10 million Americans were exposed to the anti-miscarriage drug diethylstilbestrol (DES). It has tragically caused cancers, infertility and other health problems. DES Action USA is the national nonprofit for those who were exposed.

DES Centrum
Welkom DES-betrokkenen en medische professionals.

DES in Belgium
DES in Belgium vzw heeft tot doel op te komen voor de belangen van
DES-betrokkenen, slachtoffers van het medicijn Diëthylstilbestrol.

DES (Diethylstilbestrol) Info
We welcome everyone from the DES community – Mothers, Daughters, Sons, 3rd Generation and Beyond, Transgender, and family and friends of DES-exposed – as well as those interested in learning more.

WONDER DRUG
Scientific Drama currently at script stage inspired by the true story of DES (diethylstilbestrol), a toxic, carcinogenic drug seen as a medical miracle to help women with pregnancy issues and a cash cow for pharmaceutical companies upon its creation.

More DES DiEthylStilbestrol Resources

DES DiEthylStilbestrol Resources (3)

Want to know more about the pregnancy drug DiEthylStilbestrol?

DES-molecule image
Diethylstilbestrol DES

DES, Guilt, Fear, and other Emotions
Review of the emotions including anger, anxiety, fear, frustration and guilt felt by most diethylstilbestrol DES victims.

DES Activist outside USA
Carol Devine, Founder and Coordinator of DES Action Australia-NSW, highlights the difficulties for a DES activist to access information outside USA.

DES and Breast Cancer Risks
Are DES daughters at higher risk of Breast Cancer? What is the NHS approach in UK and what are the prevention measures?

Wanted: DES Aware Doctors
Please contact your local DES Action Group if you know a sensitive, aware doctor that you would recommend to DES victims.

DES (Diethylstilbestrol) Symposium May 2011
Find Location, Time, Speakers & Programme of May 2011 DES Symposium held in Boston U.S.A.

More DES DiEthylStilbestrol Resources

DES DiEthylStilbestrol Resources (2)

Want to know more about the pregnancy drug DiEthylStilbestrol?

DES-molecule image
My DES Daughter Journey – Introduction
The journey started with a miscarriage and an operation. Now my DES journey is taking a new start with my Diethylstilbestrol “Journal of a DES Daughter”.

My DES Daughter Journey – Doctors
I have been exposed to DES but doctors needed more evidence to accept that diethylstilboestrol had contributed to my miscarriage.

The FDA is lying by omission
M. Henderson (US FDA) and C. McCarthy (screenwriter) communication about the health benefits of limiting the use of DES diethylstilbestrol in pregnancy.

International Women’s Day March 2011
Attend Journal of a DES Daughter International Women’s Day event on Facebook. Celebrate the courage of women affected by diethylstilbestrol.

French study reveals more damaging DES side effects
Link between DES and mental illness issues revealed by a recent study conducted by M.O. Gobillard-Soyer, former director at the CNRS.

More DES DiEthylStilbestrol Resources

DES DiEthylStilbestrol Resources (1)

Want to know more about the pregnancy drug DiEthylStilbestrol?

DES-molecule image
Diethylstilbestrol DES
Journal of a DES daughter on Di-Ethyl Stilbestrol® (or diethylstilboestrol in UK). Sources DES action groups, DES exposure, DES pregnancy & DES media information.

DES Exposure
Diethylstilbestrol exposure may have affected three generations (DES mothers, their children and grandchildren). Sources review of DES exposure.

DES Side Effects
Diethylstilbestrol side effects may have affected three generations (DES mothers, their children and grandchildren). Sources review of DES side effects.

DES Pregnancy
Diethylstilbestrol side effects are frightening, but here is a message of hope to all DES daughters living a DES pregnancy.

Distilbene® Drug
Despite warnings to discontinue using DES in pregnancy, Distilbène® continued to be prescribed to pregnant women in France until 1977.

More DES DiEthylStilbestrol Resources

YouTube DES Videos in English

The story of the multi generations DiEthylStilbestrol tragedy in videos

YouTube DiEthylStilboestrol’s Channel – Arthur L Herbst, MD – 40th Anniversary of DES Paper
2011. “Commemorating Arthur L Herbst and the 40th Anniversary of His Landmark DES Paper“.

YouTube DiEthylStilboestrol’s Channel – WCVB-TV “Chronicle” Segment on DES Diethylstilbestrol
2011. “February 18, 2011–WCVB-TV Boston’s newsmagazine “Chronicle” interviewed longtime DES activist/DES historian Andrea Goldstein, DES Daughter and “Wonder Drug” screenwriter Caitlin McCarthy, and DES researcher Dr. Julie Palmer for its segment on DES (diethylstilbestrol)“.

YouTube DiEthylStilboestrol’s Channel – DES concerns: The next generation
2011. “DES has consequences for those who took it, their children and maybe their grandchildren“.

YouTube DiEthylStilboestrol’s Channel – Caitlin McCarthy of Wonder Drug at 2010 AOF Fest
2010. “Meet the incredibly talented Caitlin McCarthy, author of the fantastic screenplay WONDER DRUG from her Award Winning appearance at the 2010 AOF Festival in Pasadena CA 2010. The multi-award winning writer talks about her work in this interview“.

YouTube DiEthylStilboestrol’s Channel – Hearing DES Daughters
2010. “IES113Hearing DES DAUGHTERS“.

YouTube DiEthylStilboestrol’s Channel – New Cervical Cancer Screening Guidelines
2009. “Women at increased risk have a higher chance of getting cervical cancer than women at average risk. Women at increased risk include those who have: Diethylstilbestrol (DES) exposure before birth“.

YouTube DiEthylStilboestrol’s Channel – Question on Ectopic Pregnancies
2009. “AN ECTOPIC PREGNANCY IS SERIOUS: CONSULT YOUR DOCTOR. Answering the Question for DprJones“.

More DES DiEthylStilbestrol Resources

Flickr DES Photos Sets

Picture galleries available with social networking, chat, groups, and photo rating

flickr sets
Flickr DES Diethylstilbestrol’s Sets – Australia
DES Action Australia-NSW was established in 1995 by Carol Devine, DES daughter, DES activist, founder and coordinator of the Sydney based group.

Flickr DES Diethylstilbestrol’s Sets – Books
DES Diethylstilbestrol’s Sets – Books

Flickr DES Diethylstilbestrol’s Sets – DES Info Blog
DES Info is not an official organization or group. It was created by several DES Daughters as a way to proactively share information about DES.

Flickr DES Diethylstilbestrol’s Sets – Drugs
Diethylstilbestrol or DES was sold under many brand names including Distilbène®, Stilboestrol-Borne®, Benzestrol®, Chlorotrianisene®, Estrobene® and Estrosyn® to name just a few.

Flickr DES Diethylstilbestrol’s Sets – Events
Symposiums, colloques, seminars and other DES events from around the world.

Flickr DES Diethylstilbestrol’s Sets – France
The support group Réseau DES France was established in 1994. They’ve achieved many results and successes such a the right to longer maternity leave for DES pregnancies.

Flickr DES Diethylstilbestrol’s Sets – Media
DES media news. Press cuttings from around the world

Flickr DES Diethylstilbestrol’s Sets – Research
DES Diethylstilbestrol’s Sets – Research

Flickr – DES Diethylstilbestrol’s Sets – USA
DES Action USA is a non-profit organization whose mission is to identify, educate, provide support to, and advocate for DES-exposed individuals as well as educate health care professionals.